Cushings and Stuff

Here is the official cushing disease update. This is what we KNOW, what we DO NOT know, what we wish everyone DID KNOW, and our invisible "cousin IT"
Have you ever wanted something so badly you think about it every day? When you wake up, you are thinking about it. When you lie down at night, you are thinking about it. Even if your brain is not thinking about it, your body reminds you.
What if what you wanted was a TUMOR?
Not really WANTED like you put it on your Christmas list or begged someone to get you one. More like the stand up and be accounted for. I have named my want, my invisible tumor, His name is COUSIN IT and we are patiently waiting his arrival into our lives. You see, what we DO KNOW is that 1/2 of all patients with cushings disease, whose biochemical results indicate a cushings re-occurrence, the tumor can not be located by a MRI. They are too small most of the time to be seen. We are also aware that this is our reality.
I KNOW that I have lived the past 3 years in a shell of my body-drifting in and out of what is my NORMAL. "me". Size 4-14, up and down and in between. Hair falling out in globs, hair coming back in all wacky and crazy. Round face-skinny face, happy-sad, tired-on the go, good skin-bad skin, memory loss-sharp mind, and on and on and on.
Now, as pieces of the puzzle begin to fit together, I at least know more WHYS than I did before.
We KNOW I have Cushings disease. My official diagnoses came from the Mayo Clinic 3 months after my surgery to remove the ACTH secreting tumor on my pituitary gland. NOW we know (or I guess I should say, almost know) my cushings disease is cyclical or episodic- which makes complete sense of all the ups and downs. It does not however, make treating it any easier. It actually makes it more difficult and pushes an already rare disease into the freakishly rare category. Cyclical cushings, by definition, is "characterized by repeated episodes of cortisol excess interspersed by periods of normal cortisol secretion. These cycles can occur regularly or irregularly ranging from days to years" They consider cushings to be cyclical only after you have had surgery and you have evidence of clinical relapse (Surgery April 2008, relapse July 2009, July 2010.)
What we DO NOT know. If there is a tumor again, where is it hiding? Remember 50% are not detected on MRI's. Pituitary=cherry, tumor= pea. Understand?
Recently I spoke with my doctor at the Mayo Clinic. They have been really about listening to me this time No one has called be overweight or depressed. My neurosurgeon would gladly go in and look around if I wanted him too. I KNOW that is scary. When he had a target(tumor) he went in, got what he needed and got out. Now he would be extending the visit- poking around very close to my optic nerve(vision loss) and carotid arteries (stroke, death) PLUS- not to mention that whole nose thing. Breaking, puncturing the sinus, nose packed so tight head ready to explode, no sneezing, and oh yeah $80,000! So, we are not at the point to risk all of that RIGHT now. We do have other options. like Gamma Knife Radiation but "Cousin It" needs to at least peek out of hiding so we can blast him. an so far, he has not shown himself. There is also the little issue I have with have screws placed in my head at four different points.
Our Family KNOWS that besides the physical discomforts of cushings disease there are emotional ones as well, so these are the things we WISH you knew about cushings.
Cushings disease does have emotional ramifications, that is PART of the disease.People who have had recurrent relapses said the emotional part gets worse with each episode. I KNOW this, Kevin KNOWS this, our children KNOW this. Kevin has talked with all of my doctors, I have talked with my doctors- we have talked about it but dealing with it is difficult. Unfortunately, cushings disease DOES affect the body AND the brain.
Lets face it, sometimes I am just a crab, it has nothing to do with cushings, sometimes I am just that way. I do not want to make the disease an excuse for being crabby, sometimes it's just because I AM crabby. BUT- sometimes I am crabby BECAUSE of the disease. As a family, we are learning to recognize that.
Here is a little cortisol 101 training. Some jobs of cortisol are:
to maintain blood pressure
to control cardiovascular function
to control inflammation responses
to balance insulin
to regulate metabolism
BUT MOST IMPORTANTLY- it helps the body respond to stress. We have LEARNED and wish people knew.
Stress+Mary=BAD
My cortisol, always on the lowish side(which is totally off kilter with cushings in general), combined with my high ACTH is a bad combo for stress. Stress can include illness, car accidents, medical emergencies, but more importantly, every day stressful events. Quite simply, my body has no "extra cortisol" to respond to stress, all the ACTH is eating it up.
SO- besides being a husband, father and sole provider to our family, Kevin has also had to take on the role of keeping my emotional cup full. To keep my anxiety and irritability at bay. Keeping me emotionally full has become a new job for Kevin, a job Kevin is fully committed to. We KNOW Kevin is a wonderful husband, father and provider, to question his motives otherwise, is hurtful to him and believe me people do it.
Where most people would make an off handed comment such as "I am soooo stressed out..." I might say, or yes, even shout, turn out the light, get out of this room, and leave me be while I try and will this stress out of my body. If I do not do that, the next day, I will be in bed. Do I always do it in the best way, heck no. If there is one thing I have learned through this is that I have become an expert at recognizing stress in my body. I am getting better at removing myself from stressful situations, before my body reacts negatively. This means sometimes doors are shut(loudly), feelings may be hurt, but selfishly, I need to start protecting ME. Does this mean I am not a great mother or a caring wife. No. it simply means, I am dealing with this craziness the best I can. Period! We as a society are all "stressed out" Unfortunately for me, a pill or yoga simply will not help.
We could leave tomorrow for the Mayo Clinic but as a family are not yet ready. We will wait until the time comes, when exploring is a better alternative to waiting it out. Our family will know when that time comes.
We know people talk, laugh, question and even judge what we are going through. But for all of those people, the people who pray and support us, far out number the others. I can not end this post on a negative note, so I will share a great story...
When this all began again this summer, my dear friend Fabiola(Fabi) was in Brazil visiting her family. Upon hearing my test results, they traveled to Sao Bento. The very place where my prayers were answered (see October 2009 post- the power of prayer). Fabi knelt in the very place I had knelt and prayed for my healing. Sao Bento is so important to me. She knew that. Juliana (Fabi's sister) gave me a Sao Bento medal which I wear every day. It reminds me of as healing. Sao Bento is Portuguese for Saint Benedict and is "a constant silent prayer and a reminder to us of our dignity as followers of Christ."
These simple acts of friendship, along with a supportive husband and children help more than anyone knows.
We all have cracks, we are all broken in different way. When we face obstacles in our lives it reminds us we need friends, we need family but most of all we need God.